Young Delaware farmer’s melanoma death leaves lasting impact

HARRINGTON — Samantha Gustafson set clear goals for her life and steadily started ticking them off like a to-do list.

She would become a teacher, marry her high school sweetheart, raise their children in a wholesome environment and someday host Sunday dinners and Easter egg hunts for her future grandchildren.

Still in her 20s, she thought the life she was living would continue for decades.

She never thought it would come to an end so quickly.

Her husband, Brett, died in December from melanoma.

He noticed a small bump at the base of his neck after the family returned from a late January trip to Walt Disney World in 2013.

Not one to go to the doctor and at 28, rarely having cause to do so — Samantha said in their 12 years together he went to the ER twice — it took some nagging to get him to make an appointment.

The family doctor wasn’t overly concerned, Samantha said, and referred Brett to a general surgeon who eventually removed the lump in early June.

At that time, Samantha, 27, was wrapping up the last days of school at Lake Forest’s South Elementary where she was a third-grade teacher. Brett didn’t tell her that the doctor called him in to deliver the results of the biopsy. He went alone.

When he pulled her into their bedroom that evening and told her he had cancer, he didn’t even know what kind. He didn’t remember the details from the shock of hearing the news that morning, she said.

When he told her, she responded, “Shut up. That’s not funny.”

They put their two young boys to bed and spent the weekend considering the worst possibilities while assuring themselves of the positives — that Brett was young, healthy and felt “perfectly fine.”

“It was awful,” she said.

“I know he was trying to protect me (by going alone), because that’s who he was,” Samantha said during a recent interview.

In her words, Brett was “Prince Charming in Wrangler jeans and a John Deere cap, the hero to his two boys, and the best son, brother, grandson, family member a family could ever dream to have. He was always willing to help someone, anyone, who needed a helping hand, even if that meant not getting home until the wee hours or working around the clock.”

He cherished his family and friends, farming and being in the outdoors, she said.

Though she saw as he fought melanoma how his struggle and positive outlook despite his advanced diagnosis of the aggressive skin cancer affected people, she couldn’t imagine the reach of his story.

“He never felt sorry for himself,” she said.

His mantra: “It is what it is.”

“People have come to me and said it made them re-evaluate their own lives.”

Brett died Dec. 23 and when his obituary was published the week between Christmas and New Year’s, it impacted complete strangers. Samantha said she’s been touched by the kindness of countless people who have offered everything from prayers to meals and farm labor and financial donations.

“We’re up to 57 people who have donated” to Penn Medicine’s Abramson Cancer Center where Brett sought treatment, she said. “He’s making such a difference.”

She wrote in a thank-you letter published in this newspaper early this month: “In life, Brett touched so many people with his amazing family values, work ethic and down-to-earth personality and we lost that amazing person.

“But in death, he has continued to literally change the world. There is not a day that goes by that someone doesn’t mention his obituary, his story, his life or how it has personally touched theirs. Words will never be able to describe our grief and that is a grief that may never pass but it also has carried with it a hope, a hope to change others’ lives.”

“I’ll show him”

Samantha and Brett crossed paths at Lake Forest High, where they rode the same school bus.

She was 14 years old. Brett was a sophomore and “he wanted nothing to do with me,” she said, smiling at the memory.

Despite the best efforts of a teenage girl on a mission for romance, her bubbly, energetic personality and carefully done hair and makeup did not impress Brett.

His cousin told her that he said “She’s not country enough for me.”

And although her knowledge of country at the time extended to simply living in a rural area, she thought, “I’ll show him.”

“I knew he was going to be my husband. He didn’t know, but I knew,” she said.

Hunting and fishing, and eventually farming, followed.

“That deer is mine,” she said, pointing to one of at least six mounted on the walls of Brett’s “man cave,” where tributes to hunting feature prominently and the windows offer a view of their chicken houses. The sounds of their dozen beef cows carries inside.

Across the room, tucked in a corner is the first deer Brett ever shot. The two were teenagers at the time on a hunting outing in Maryland. It’s a good thing he brought home the trophy, Samantha said. She’d hit his arm thinking he was teasing her and nearly caused him to miss the shot.

They married May 10, 2008.

Six months into their first year of marriage, Samantha became pregnant. That was a little earlier than the couple had planned to have children, but because they wanted siblings to be close in age, they kept on track with their plan and after Ty was born in 2009, Luke followed in 2011.

She treasures photos her friend took of their family of four on the farm, sitting in front of tall rows of corn and near the buildings late last summer.

“That next week he stopped walking,” she said.

Brett’s left knee had become weak and doctors realized cancer, already in his brain, also riddled his spine. He began using a walker.

Many of the pictures, in color and black and white, are framed inside her home, which Brett built, sitting on shelves and hanging on walls beside photo collages of the boys that Samantha made for Father’s Day gifts each year.

After Brett graduated, he took over the family poultry operations, raising chickens for Perdue Farms. He also helped his father with his chicken houses, grew small grains and hay, and worked full time for the Blessings’ farm in Felton.

“He was Superman,” Samantha said.

Skin cancer diagnosis

After their weekend worrying about Brett’s biopsy results, Samantha called the doctor’s office Monday morning. The nurse, she recalled, said, “Oh, Honey. I’ve been waiting for you to call. I’ve been thinking about you guys all weekend.”

And though she remembers noting the sadness in the nurse’s voice, Samantha was relieved when the nurse told her Brett had skin cancer.

“It’s skin cancer. You cut it off and you’re fine,” she admits naively thinking at the time.

The biopsy showed metastatic melanoma, indicating the cancer wasn’t just in the small tumor that had been removed but was elsewhere in his body.

“Never in my wildest dreams had I considered it could be in an organ,” Samantha said. Aside from the small bump that sent Brett to the doctor, he had no symptoms or ailments.

A round of diagnostic imaging followed and Brett’s case was accepted at Penn Medicine’s Abramson Cancer Center in Philadelphia. That’s where they met Dr. Tara C. Gangadhar, medical oncologist and assistant professor of medicine.

Collecting copies of medical reports for the team there is how she learned cancer was in her husband’s brain.

Brett had an MRI, but the couple didn’t get results and they assumed no news was good news. When they went to Bayhealth for a PET scan a few days later, Samantha was handed a copy of the MRI for her files.

She sat down in the waiting area and did the “stupidest thing I’ve ever done.” She opened the file and quickly realized that her husband had seven lesions of cancer in his brain.

Though she tried to cover, Brett realized something was wrong. He pulled the file from her hands and read it. The next moment, a hospital worker called him back for his scan.

“He handed it back to me and he says, ‘Don’t cry.’”

Hysterical, she sat in the waiting room for more than two hours while Brett had the MRI.

A high-resolution MRI at Penn found that there were really 31 lesions in Brett’s brain.

“We never got good news,” she said.

Samantha kept a binder of diagnostic results, drug information and melanoma treatments. She scoured the Internet, reading blogs and forums and drug websites to learn more about melanoma and treatment.

“That was my job. I was going to find a way to save him,” she said. After pausing, she finishes softly, “but it didn’t work.”

In explaining the months from Brett’s diagnosis to his death two days before Christmas, Samantha candidly talks about the ups and downs. She follows frank descriptions about how cancer attacked Brett’s body and how they reacted to each new development with sincere appreciation for the small blessings and the outreach of friends and strangers who have helped them.

“There have been so many blessings along the way,” she said, from amazing health insurance coverage to a strong support system of family and friends.

She ticks off a list of the parents, grandparents and great-grandparents who regularly babysat and shuttled the boys to day care.

“We have an amazing family. I never once had to worry about our children,” she said. “They took on the role of helping us with the kids.”

Meanwhile, Samantha took care of Brett.

She considers them blessed that the seizures that eventually rattled Brett didn’t start until the end of his life.

“It could have been that from Day One,” she said. “That could have been his first symptom.”

She’s thankful for the people she doesn’t even know who donated their paid time off for her leave of absence and who paid money to day care.

“I’m not supposed to know about these things. They just did them out of the kindness of their hearts,” she said.

Melanoma treatments

As part of the approach to control the melanoma in his brain, Brett completed whole brain radiation, treatment that required a daily dose of radiation for 14 days. It took about five minutes each time.

That was in September and about two weeks after it finished, Brett’s knee became weak and doctors learned melanoma riddled his spine.

“The hour we found that out,” she said, she went directly to Lake Forest School District’s Central Business Office to start her leave of absence so she could be with Brett around the clock.

In early October, they started whole spine radiation; like the whole brain approach, he would have daily radiation for 14 days, about five minutes a day.

“He started losing function in his legs really quickly,” she said, and began using a walker to help him get around.

Yet, they continued their resolve, despite what seemed like bad news at every turn, to stay positive.

“We weren’t giving up. We were going to fight,” she said.

When sadness overwhelmed her, Brett reeled her in.

“I would just cry. And he would say, ‘Samantha, cut it out. It is what it is.”

By November, Brett, always a trim guy who wore 32-34 pants, was losing weight at a dangerous pace.

Frequently nauseous, food wasn’t appetizing.

Some days, Samantha prepared five or six meals trying to find something that he wanted to eat.

“I was cooking up a storm,” she said. “It was about him. I wanted to do everything I could for him. He deserved that.”

They stayed home and focused on family time, with pizza and movie nights with the boys. She set up a sewing machine in Brett’s man cave and began making a quilt for his mom.

“We centered everything around this room,” she said, sitting on a couch with her feet tucked under her legs.

“We just spent all of our time in here.”

While cancer demanded attention, so did their sons. They strived to keep a sense of normalcy for the 2- and 4-year-olds among the chaos.

Even when he didn’t feel good, Brett would read the boys bedtime stories after their baths.

“It wasn’t all serious all day,” she said.

At Halloween, when the radiation to treat his spine had ceased and they held out hope for the intense immune-therapy pills to work, she took the boys trick or treating. They dressed up like pirates and carved pumpkins with Brett.

She scrolled through photos on her phone that captured those moments. In one picture, the boys and Brett — all three tucked in his overstuffed camouflage recliner — work on a puzzle.

“He was such a good dad,” she said. “They knew Daddy was sick. They know Daddy’s in Heaven.”

When a doctor first told her to start Hospice care, she wasn’t ready to hear it. She agreed to home health care services, but continued to handle Brett’s daily care.

“Thank God that he didn’t have to lose his dignity along with everything else,” she said.

On a Friday night in early December, Brett started having double vision. Then, sitting on the arm of his chair, she noticed his tongue was blue. She took a picture and texted it to Dr. Gangadhar, who said it was a side effect of the drugs he was taking. They stopped them.

The Gustafsons went to bed that night and had a “super serious conversation” about plans for the future, their children, the farm and even “who I could and couldn’t marry.”

“We fell asleep holding each other and crying,” she said.

Around 2:30 a.m. she heard Brett gasping for breath and realized he was having a seizure. After going to the emergency department and awaiting transfer to Penn, he had another seizure the next day.

Once at Penn, the team found the cancer had spread in his brain.

“They said it was over and there’s nothing we can do and it’s time to start Hospice,” she said, her voice cracking. “But I had heard that a month ago,” so she was still asking: “Can he come back from that?”

“I wasn’t ready to start Hospice.”

Brett wasn’t completely coherent and though he was present when the doctors explained his medical prognosis, he didn’t remember after they got home. He woke up the next morning a week after the first seizure, cognizant and wanting to know what happened.

“I had to tell him what the doctor said because he didn’t remember,” she said. “I had to look him in the eye and tell him ‘You’re going to die.’”

“He said, ‘It is what it is’ and ‘I love you.’”

That night, they opened their home to friends and family.

By Monday morning, the home health care nurse convinced Samantha to call Delaware Hospice, which could offer more services and support. She made an appointment, but after Brett had another seizure and showed signs of severe pain, they ended up at the Delaware Hospice Center in Milford, where staff could quickly comfort him.

“They have a beautiful facility there,” she said. “We literally moved in.”

“I just laid in bed with him for six days. His family took on the role of taking care of me.”

“And this was the week before Christmas.”

Brett’s heart rate and breathing changed.

Samantha said, “I changed my prayers.” Instead of asking for a miracle, she prayed, “God, please let him be OK.”

In a moment of panic, she begged Brett not to leave her. He fumbled to grab a pillow and Samantha and his parents, sitting on each side of him, realized he wanted the pillow case off of it. He balled it up and wiped her tears, then he pulled her onto his shoulder and covered her with it.

He motioned for all their loved ones in the room to gather close and told them, “Take care of her.”

Along with her faith and their two beautiful little boys, Samantha draws strength that Brett’s life and death will make a difference, through melanoma research and awareness.

“I wouldn’t be here if it wasn’t for them,” she said of Ty and Luke. “I have a very strong faith. I don’t think I could get out of bed every day without it.”

The shock of her husband’s death has subsided and now Samantha is trying to accept her new reality of juggling the 24-7 demands of mothering and farming that range from readying poultry houses for new chickens to potty training a toddler.

She officially resigned in January from her job as a third-grade teacher at Lake Forest to focus on the farm and ensure the legacy Brett wanted to leave their sons.

Working around the chicken houses brings some comfort.

“That’s where I feel him,” she said.

After making every decision, big and small, with Brett for more than a decade, adapting is difficult. When she got her hair cut last month, she said, “I asked 15 people how I should cut my hair.”

But Brett’s was the only opinion that mattered.

“I’m a widow,” she said, frowning at the absurdity of the statement. “And I didn’t choose that.”

Samantha believes a friend whose husband also died from cancer who told her that there will be joyous moments. And there are, but she said, the moments come with the reality that Brett isn’t there to share them.

When Ty ran around Christmas morning deftly handling his new marshmallow hunting bow, she knew Brett would have been proud.

She draws strength from her religious faith. While she said some people may question God in times of tragedy, she doesn’t blame him.

“God doesn’t do this to people. Life happens,” she said.

“I’ve always had the mentality that everything happens for a reason,” she said, noting that her father’s death in a car accident when he was also 28 and she was just 6, led to her family’s move to Delaware where she eventually met Brett.

“I feel like God opens doors for a reason. Here’s a door that he’s opened. I didn’t want it open,” she said. “But I have to do something with it.”

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